Last-minute bleg post

My cousin, Sydney, is 11 years old. She is a terrific speller, she's on the honor roll at her school, she's a biology trivia whiz, and she suffers from Juvenile Idiopathic Arthritis. JIA is a debilitating autoimmune disease that confuses children's immune systems into attacking their own healthy tissue, causing inflammation, fever, and severe pain. Sydney was diagnosed with JIA as a toddler; over the years she has spent months in the hospital, lost (and, happily, regained) her ability to walk, and endured the discomfort of high-contrast CT scans and painful bone marrow biopsies. Some effects of her disease and its treatments have included decreased lung function and scarring of her lung tissue, as well as calcium depletion and major bone loss. Her current medication has to be administered by injection every day; it has to be refrigerated, which limits camping/travel opportunities for her family, and makes her face and tummy appear puffy and bloated.

For evaluations and treatment Sydney's parents drive her 120 miles each way between San Francisco and Yuba City, CA because there is no pediatric rheumatology specialist in their area. Lack of accessible care is one of the the most daunting issues facing individuals affected by rheumatic diseases nationwide. However, thanks in part to logging all those miles in the car, Sydney's condition has become more stable over the past couple of years, and she has been able to participate exuberantly in her favorite activities, including reading, swimming and horseback riding. Sydney adores animals and, accordingly, has recently modified her request through the Make-A-Wish Foundation. Formerly Sydney's wish was to meet Miley Cyrus, but the wait would have been awfully long and, as I suspect Miley's near due for a pregnancy announcement or a stint at Cirque Lodge, it's good news that Sydney's new wish is to meet/hold/interact with a real, live monkey. We hope that she will be able to have her wish granted within the next year or two!

This weekend members of my family will be participating in the 2008 Sacramento Arthritis Walk (& Dog Walk) to raise funds for the Arthritis Foundation. As stated on the Sacto walk website, "The Arthritis Walk is the Arthritis Foundation's annual nationwide event that raises awareness and funds to fight arthritis, the nation's leading cause of disability [who knew? I didn't, before now]. It is a tremendous opportunity to help improve the lives of the 46 million men, women and children with doctor-diagnosed arthritis."

Sydney will be walking and so far she has raised three times her modest target of $100 for the Foundation, but her team is still shy of their $2000 goal. If you feel so inclined, I invite you to visit Sydney's Team Cure sponsorship page (Sydney is pictured in her blue honoree's cap).


For your further information here is an eye-opening list of findings reported to Congress by the Pediatric Rheumatology Workforce in February 2007 (source):

• Only pediatric rheumatologists have been trained as specialists to treat the complex, severe, and sometimes life-threatening rheumatic diseases of childhood.

• Pediatric rheumatic diseases affect nearly 300,000 children in the United States.

• The most common juvenile rheumatic disease, juvenile rheumatoid arthritis, is unique to children and can affect children as young as infants.

• As a group these conditions are among the most common chronic illnesses of childhood and involve considerable disease burden and disability.

• Pediatric rheumatic diseases require frequent and ongoing medical care: physician visits, laboratory work, infusion therapy, and physical and occupational therapy. Long travel distances between patient and caregiver can impede continuity of care and access to important ancillary healthcare services.

• Fewer than 200 certified pediatric rheumatologists currently practice in the United States, making it one of the smallest pediatric subspecialties.

• Thirteen States, including heavily populated States such as Arizona, South Carolina, and Alabama, lack a pediatric rheumatology provider within their borders.

• On average, children in the United States travel 57 miles to reach the nearest pediatric rheumatologist. In contrast, children need to travel less than 25 miles to reach pediatric specialists in cardiology, endocrinology, and many other fields.

• Pediatric rheumatologists unanimously perceive that there is a national shortage of pediatric rheumatology providers; two-thirds also perceive a local shortage in their practice area.

• Pediatric rheumatologists attribute the current shortage to low salaries, inadequate reimbursement, and poor working conditions. At the assistant professor level, pediatric rheumatologists' annual salaries average $115,022. In contrast, average salaries for pediatric cardiology, neonatal medicine, and pediatric critical care medicine at this academic rank are more than $144,000.

• The limited supply of pediatric rheumatologists often results in long wait times for appointments, delayed diagnosis or treatment, and possibly leads to misdiagnosis and inappropriate treatment.

• One third of institutions housing pediatric residency programs would like to hire a pediatric rheumatologist but are unable to do so for financial or other reasons.

• The majority of pediatric rheumatologists work in a small number of academic medical centers where they are also responsible for performing basic and/or clinical research and educating medical students, residents, and fellows. Thus, other professional activities limit the time they have available to provide patient care.

• As many as one-third of pediatric rheumatology patients are insured through Medicaid, which reimburses physicians at levels below those of private insurers and Medicare. Low reimbursement rates limit clinical revenue for pediatric rheumatology practices and threaten their financial viability.

• In some States, demand models estimate that there are over 3,000 children with rheumatic diseases per pediatric rheumatologist, a number that far exceeds the average practice capacity of 443 children.

• Using State level population data, models developed for this report estimate that at least 337 pediatric rheumatologists are needed to meet patient care needs. Given the current number of pediatric rheumatologists, there needs to be a 75 percent increase in the number of pediatric rheumatologists.

• The majority of recently trained pediatric rheumatologists practice in a county that has another pediatric rheumatologist in practice. If maldistribution of supply continues, increases in supply may not ameliorate regional, statewide, or local shortages unless there are incentives to locate in areas that currently lack providers.

• While there were 23 advertised pediatric rheumatology positions in September 2004, only 10 pediatric rheumatology fellows completed training in the 2003-2004 academic year, suggesting that current training levels are not sufficient to fill vacant positions.

• One-third of medical schools and 40 percent of pediatric residency programs have no pediatric rheumatologist available to provide patient care or educate physicians in training.

• Many medical students and general pediatrics residents receive little training in the diagnosis and management of children with rheumatic disease, which may lead to unwillingness to care for these children and perpetuate low levels of interest in this field.

• While specific effects of the current shortage of pediatric rheumatologists on research activities are unknown, the pressures of meeting patient demand in the face of a provider shortage leaves limited time for research activities and may impede the advancement of medical science in this field and delay the development of treatments.
  

Warm thanks for your consideration,

Em